Tania’s story

‘When it really matters, he will share what’s important to him, and I can represent that. He trusts me to take care of him in that way. I will always encourage independence, but I will step back slowly, so he has confidence in doing those things.’

Our first experience in Steiner school

When Patrick went to primary school, he wasn’t yet diagnosed, so some of the choices I made were about my feeling that he was a little bit different. It was important to me that, the environment was able to be supportive of his whole self, and not just about learning. So I chose the local Steiner school.

By the time Patrick was in grade 2 it was apparent to me that he was a little bit different to his peers. I went to an open day for the school, and noticed that the other children’s work was quite progressed beyond Patrick’s skill level. It really worried me that the school weren’t upfront with me about that at the time. [They said], ‘Oh well we actually do have an aide in the classroom with him’, but they’d not discussed that with me. At the time, I think I felt like it meant that they didn’t trust me as a mum – that they thought that I was the source of the problem.

Learning to persist and be confident

It was quite hard for me to trust them. It made it hard for me at the time so see that there were already some very good processes and practices in place – that Patrick was supported by good friendships, and we had a good community there. The focus was so much on his wellbeing, academically, that I couldn’t see these other strengths. And I didn’t really understand the processes of schools, because it was my first experience as a mum.

Patrick’s never had any funding towards an aide, and I suppose that’s one reason why, in hindsight, what I had at his first school was really quite special and unique. Because when need was assessed, they actually responded to the need, even if it wasn’t inclusive of me as a parent.

If I was to revisit that, and [since then], I’ve persisted a little bit longer in working out how to communicate with schools. I persist longer in trying to understand why might actually be happening here, and what can we put in place. Critical to that was my sense that I am a valued part of this process – and valuing myself that I am part of that process. Feeling confident enough to ask for what I need.

How I approached looking for schools

I was mindful of the way that I might be received as a parent. And wanting schools to see that I was really engaged in helping them, and positive, and that Patrick had some resources at home. The things that I had in mind was whether the staff were warm and engaging, and how they responded to me when I mentioned autism. Often I would bring some information about his past reports, or assessments that he’s had, or material that therapists have provided.

I would ask about the things that I knew would make a difference to him. Whether they would support kids during school lunchtimes and playtimes – that they had activities during those times that were hard for him socially. Whether they were flexible in their approach, and whether their classrooms were quite structured, and had lots of visual aides.

My thinking in planning a high school for Patrick was that a smaller environment might be better, so he wouldn’t get lost in the group. I was also concerned that the school needed to have an emphasis on welfare. The school I chose presented as a warm and community-minded school. But it was difficult to assess, because it was brand new.

Some useful strategies at high school

I always used Student Support Group meetings to explore how we could better support Patrick in the classroom. I had a lot to learn from schools too, because they’re the experts in teaching. So I’d always be listening for what they said that they could provide, but also being really clear about what I felt might be helpful.

Sometimes meetings were a place to talk about generally how Patrick was going, particularly in the primary school years, and for the school to ask me what might be useful. Things went quite smoothly, which I think that relates to the expectations of education at that level. In high school it was more difficult. With autism, there’s a difficulty for children in organizing themselves, and so even just getting from class to class and being in class was a challenge. And with multiple teachers, it’s harder to bring together a plan for a child that has different needs.

I would prepare for meetings ­– actually setting an agenda about what I felt might be important. Just a few dot points about what I felt would be useful. Sometimes schools were responsive. Sometimes they had their own agenda. I created a folder of materials about what autism is, what Aspergers is. And about Patrick’s diagnosis, different therapy reports, and tools, tips and strategies that are useful for managing anxiety or chunking information in ways that make it easier for him to understand. And I would make myself available, because it was harder at the high school, and for the teachers to have an individual relationship with me.

At times when things might not be going so well, I’ve been able to use the support of other professionals, to reinforce what I’m asking a school to provide for Patrick. Sometimes schools are more likely to listen when I’ve done that.

Sometimes schools are too busy to share everything, so I try to make it easy for them. I might say ‘Patrick has a tutor at home on a Monday night, I’d really love to know what you’re doing in maths at the moment, so the tutor can go over that with him?’ Or asking, ‘What are you noticing isn’t happening so well with the kids, when he’s trying to have a conversation? I’d love to help him with that skill at home, because he’s expressed he’s concerned about talking to other kids’. So keeping things really simple. Making it manageable for them to help me.

A time of school refusal

When I noticed that my son was really removing himself from that school, that told me – this isn’t right. And we had been pushing – we had been trying. And the high school had been really considerate about how they might adapt the program in the coming year – thoughtful about what to put together. But it was clear Patrick wasn’t in it.

It taught me to look for a school with good systems in place. And to ask other parents if you can: What’s happening with students support group meetings? Is the school responsive to having additional lunchtime activities? Is there additional support offered around tuition? Will they exchange a class for another class, if a child’s not coping too well? How flexible are they in what they’re offering for your child?

At the point when I realized it was time to change schools, Patrick was really disengaged. He hadn’t maintained any friendships there, in spite of considerable encouragement from me, and he was really clear that it wasn’t feeling right. So he was very much part of that decision, to make a change.

It was the right time for something new – to find a space that has expectations that meet his capacity, his ability.

A happy choice of a fresh start

We’ve found a great environment for him now, and he’s doing really really well.

In those hard moments, when I didn’t know what the right decision was to make, I couldn’t foresee that it could turn into such a happy thing – to make a big change. It’s been the best outcome for all of us. It’s changed our family experience, and Patrick’s experience of himself, to feel that he’s doing well in a school setting.

And it was a fresh start. And when we went to the new school, there was never a discussion about whether Patrick would be appropriate, or whether he would go. It was just, ‘Pat, if you’re interested, this is what we do. This is how the school works. And if you think it’s alright for you to come here, we’ll see you next term’. It was fantastic. And that’s exactly what I needed to hear as a mum, to know he would be seen as a whole person.

It was that sense of welcome. That sense of, ‘This community is for me’. And I can trust that he goes to school, that he has a happy experience, and it’s about a whole person. It’s about his educational needs, his social needs, his physical needs. And he comes home glowing, and says that it’s the best thing I’ve ever done.

Persist – because you can find a way

I think the hard thing for families sometimes, is making the best of the situation that we have to have. Depending on where we live, there might not be a number of options. So how can we fit in around what school provides – at home or in the community, that make up for what’s not working well, so that our kids have a good experience of themselves?

We relocated from the far east to the inner west to access supports. I’ve known of families who’ve moved from Queensland to Victoria for support. So it depends on your employment and a whole range of factors as to what you can do. But I think where there’s a will there’s a way.

In looking for the next step, I called a range of different, alternative settings, most of which I knew probably wouldn’t be able to afford. But just tried to get a sense of what was out there.

I looked at places like community schools. I looked at – is he old enough to do school at TAFE yet? What other pathways might there be? And I was often motivated by his interests. So thinking about, ‘What end goal might he want?’, and asking Patrick questions about what he might like. He didn’t really know at 14 and 15 what he wanted. But I’d try to keep that in the back of my mind at all times. Knowing that he loved sport, it has to be a place that allows him to run around, and to be a kid. And that helps him show his strengths that way.

It’s a journey for parents too

I think what’s really hard for parents is that part of these processes is that it dredges up our grief and loss. It has us acknowledge that other people’s children have these milestones that ours aren’t meeting. And it’s really confronting in that moment to do what’s most practical, or even best for our child. Because we actually feel that they deserve to have those same rights to education, in the same setting.

That’s what’s mainstream and universal approaches to education should be about. In fact, we’re not really set up for that yet. And families need to be supported to understand how to make the best of a bad thing sometimes. And when to try another door – when another setting actually might be best, because we’re reaching roadblocks.

Coming to terms with Patrick having high grades in grade 6, and then the reality in high school that he just wasn’t coping with the structure and the setting, and even the material that they were learning, was a real shock to me. I’d always felt that as long as I’d supported well, and pushed hard enough, and spoken to enough people, that we would have a fairly normal high school experience.

But there was a point where I couldn’t ignore any more that this was just too hard for him, and that he needed a different kind of help. I needed to come to terms with it being a different journey.

Now that I’m part-way through that journey, I feel a reassurance that there’s lots of ways to a happy life, and there’s lots of ways to contribute in society. I still envisage he will have a very rich, happy life. That he will have a community around him. I’m really excited about the possibilities for Patrick, now that he’s in a setting that appreciates him as a whole person. And that has the resources to do that.

Trusting my gut and looking after myself

It’s important to trust your gut. If you’re noticing things that don’t feel quite right, and your child is sharing with you in the ways that they can, whether its through behaviour, or absconding, or whatever they might be doing … I think it’s important to trust your instincts as a parent, and to really value that. That’s an important tool.

I think it’s also helped me over time to never see things as completely terrible, or completely fabulous. Seeing the good things that are happening, as well as the difficulties that I might still be working on to support Patrick’s needs. Which is often little things, like we have breakfast, or we didn’t run out of milk today! Really simple things that help him feel settled and happy. It’s really important to notice the happy things, and the good things, that are part of family life, and part of his experience of life. It’s helped me to feel balanced, and to feel on top of things, and to preserve my own wellbeing and energy as a mum.

It was really important at different points to remember the things that are working well, at the same time as things that I’m working to improve for Patrick in his experience of school or in home life. Because there’s only one of me, as a single mum. I’ve had to learn over time that I need energy for me, and for the whole family.

I really enjoy being active in supporting him by speaking to schools or organizations, and helping him to try new things, new experiences in the community.

it has also helped in recent years that the more supported I feel, the more I’m taking care of myself – the more I’m able to perhaps go to counselling, or have other strategies that take care of me – the more effective I am in the ways that I communicate with people for Patrick too.

Balancing independence and support

I’ve had fairly open conversations with Patrick about how he feels about different situations. He can sometimes share those things with me. Sometimes he thinks mum asks too many counsellor-type questions! That’s a bit of a joke in our house. But I feel glad that when it really matters, he will share what’s important to him, and I can represent that.

I know that I have that role, and that he trusts me to take care of him in that way, because if he has a difficult social situation, he will often ask, ‘Mum can you be there?’ I will always encourage independence, but I will step back slowly, so he has confidence in doing those things.

He does reach out, and he will share little things about, ‘Yeah, that teacher this did. I wasn’t so happy with that’. I’m also careful not to jump, when he mentions something. Because kids, human beings, adults, we all have things we’re not happy with. And we tend to share it over the dinner table. So I try to see if there’s a pattern, before I jump in.

Determining whether I need to pursue an issue really relates to Patrick’s safety, whether he’s getting an education, whether the information is getting through to him, whether frustration is increasing, whether he’s avoiding school. Those are some signals. Or where depression or anxiety set in. Then I really need to step in and support.

I’ve really been grateful that at his current school, there has been an active support when those times have hit. It’s not that every problem disappears. But in that inclusive environment, where they want him there, there is a caring about his experience, even in the hard times. Or even when he’s not present.

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